After fourteen years with too numerous to count misdiagnoses, this is my daily journey living with an unknown disease that has made me fully physically dependent, living by the help from my family, friends, and beloved service dog. It is how I have chosen to define myself to remain whole in spite of it.

Holiday Blinders

Holiday Blinders

I recall reading somewhere that when training race horses to run, they put blinders on the side of their eyes, so they can only see straight ahead and not on either side. Like a race horse, I have leaned to be happiest when I am only thinking of the present.


It’s the holidays, a natural benchmark for comparisons for where we’ve been and where we’re going. I’ll be honest, I don’t like bench marks. For my 16 years, which will be going on seventeen years in 2019, seems like I have been standing on the same bridge with a lot of water underneath.


Yet, I am forced to remind myself that I am nothing like that fifteen year old girl whose life was turned upside down, inside out when she left her house for the first time since becoming a quadriplegic for Christmas Eve. I was surrounded by my sisters, my best friend, my mother, and at a church, my community. I was naive, hopeful, slightly bitter, and fiercely determined that where there’s a will, there’s a way. I was slower to laugh and holding out for a full recovery before allowing myself to be completely happy.


Well, now I’m older, definitely not naive and even more sassy and feisty. I am much quicker to laugh, freer to be happy, and infinitely less full of optimism or expectations for the future. I struggle with bitterness at the inane—that I can’t put up lights outside my house without having to wait for someone else inclined and willing to be helpful to me, for example. I much more resemble the Grinch—both figuratively and literally, as my heart has shrunk due to my lack of walking for so many years. On the other hand, I am a much better cheer leader for others than I have ever been, so maybe not too grinchy…


Which is why the blinders are essential. I love the beauty, the spirit, of the Christmas season. I love the classic holiday movies—White Christmas forever topping the list, and all the sweet treats we only eat at this time of year (gingerbread-yum). The gathering of friends and family is special, and the memories formed are what I will remember year after year, (and not fatigue or pain that inevitably follows as I enjoy the moment instead of resting despite my body’s demands. Seriously, I can always rest later.)


If you are struggling with unhappy comparisons for where you are, or remembering where you’ve been, people who are no longer with us, I hope you will be able to put on your own metaphorical blinders, and experience the unblemished joy of the season!


Cant wait to see you in 2019!

The Undiagnosed Disease Network

The Undiagnosed Disease Network

Service Dogs—Angels? Possibly. Saints? Not Necessarily.

Service Dogs—Angels? Possibly. Saints? Not Necessarily.